by Margaret I. Fitch, Jessica Armstrong and Suzanne Tsang

doi:10.5737/1181912x184180185
Patients’ experiences
with cognitive changes
after chemotherapy
by Margaret I. Fitch, Jessica Armstrong and Suzanne Tsang
Being diagnosed with cancer and undergoing treatment can be a
daunting experience. The side effects of treatment often influence a
person’s quality of life. One side effect that has been identified
more recently is known as “chemobrain.” Although attempts have
been made to quantify and measure cognitive changes, little
attention has been paid to describing the changes from the patient’s
viewpoint.
Abstract
This investigation was undertaken to understand the impact of
cognitive changes on daily living and to identify the strategies
patients used to cope with “chemobrain.” Thirty-two individuals
provided in-depth interviews about their experiences living with
cognitive changes. Their descriptions provided clear evidence that
the changes could effect daily living, social and work-related
activities. About a quarter of the individuals expected the changes to
be temporary while the rest were uncertain or expected the change to
be permanent. The emotional distress people experienced was linked
to whether or not the cognitive changes interfered with their doing
something that was of importance to them. Overall, participants used
a variety of strategies to cope with the changes. The most frequently
identified strategy was “writing everything down.” When asked what
nurses could do to assist them in managing this side effect,
participants emphasized how important it is for them to have
information about the potential for cognitive change at the beginning
of their treatment.
Being diagnosed with cancer and undergoing treatment can be a
daunting experience. In addition to dealing with the insults of the
disease and the therapy, patients must confront a range of
psychosocial, economic and spiritual challenges (Fitch, 2000).
Side effects of cancer treatments can often have a significant
impact on quality of life, both during and after the treatment process.
Nausea, vomiting, fatigue, hair loss and increased susceptibility to
infections have been reported frequently (Harden et al., 2002).
Patients describe changes in self-esteem, body image, social roles,
faith, life meaning, despair and emotional distress, as they attempted
to cope with such symptoms over the course of their cancer journey.
Recently, cancer patients undergoing chemotherapy treatment have
reported experiencing changes in their thinking, ability to
concentrate, and recall. They often refer to these cognitive changes as
“chemobrain” or “chemo-fog” (Anderson-Hanley, Sherman, Riggs,
Agocha, & Compas, 2003). Since adequate cognitive functioning is
imperative for patients to continue with their daily lives, this
phenomenon has the potential to disrupt and decrease the quality of
the patients’ lives.
al., 2004; Johnson, 2006), central nervous system (CNS) tumours
(Raffa et al., 2006), solid tumours (Minisini et al., 2004) and
lymphoma (Correa et al., 2004). It is considered multifactorial and
its etiology is not fully understood (Tannock, Ahles, Ganz, & van
Dam, 2004). The aspects of cognitive functioning that have been
investigated include: executive function (brain’s supervisory or
regulatory function), verbal or working memory, visual memory,
attention, language information processing speed, visuospacial
ability, and motor function (Anderson-Hanley et al., 2003).
Variations in effect have also been noted for different types of
regimens. For example, the addition of tamoxifen may lead to more
widespread memory loss (Bender, Paraska, Sereika, Ryan, & Berga,
2001). However, there are challenges in measurement that make the
categorization of impairment inconsistent across studies and, hence,
the true nature and extent of the impairment unclear (Shilling,
Jenkins, & Trapala, 2006). Different measurement tools are utilized
and many question the appropriateness of using tools developed for
other populations with the cancer population. Concern has been
expressed that these tools do not capture some of the subtle changes
cancer patients’ experience.
Despite the measurement challenges, several investigations have
used neuropsychological tests with patients to quantify and evaluate
cognitive functioning. Statistically significant differences have been
reported between healthy individuals and the breast cancer patients
receiving adjuvant chemotherapy (Brezden, Phillips, Abdolell,
Bunston, & Tannock, 2000; Bender et al., 2001; Tchen et al., 2003;
van Dam et al., 1998; Wieneke & Dienst, 2004; Shilling et al., 2006).
Statistically significant differences have also been reported between
breast cancer patients who did or did not receive chemotherapeutic
agents (Schagen, 1999; Ahles et al., 2002). The incidence of
impairment is reported to range from 32% to 75%. While the results
were varied regarding the specific cognitive capacity where
impairment was identified, the most commonly reported areas for
changes in these studies were memory and concentration. Other areas
where changes were noted included attention, language, and visual
motor functioning (Jansen et al., 2005).
Brezden et al. (2000) and Ahles et al. (2002) reported a
lessening of impairment following chemotherapy treatment, but
lingering nonetheless one year to five or more years later. Bender
et al. (2001) found that women who were already post-menopausal
before commencement of treatment showed less pronounced
cognitive deficits. Wefel et al. (2004) reported 36% of breast cancer
patients undergoing chemotherapy who exhibited impairment had
already been impaired prior to the start of their chemotherapy
As the cadre of survivors increases, a growing number of
publications report cognitive impairment after cancer treatment. The
phenomenon of “chemo-fog” is now almost universally accepted
and has been observed in those treated for breast cancer (Wefel et
Background literature
CONJ • 18/4/08
180
Margaret I. Fitch, RN, PhD, Head, Oncology Nursing and
Supportive Care, Toronto Sunnybrook Regional Cancer Centre
[email protected]
Jessica Armstrong and Suzanne Tsang were research assistants
for this study while on their co-op term from the University of
Waterloo.
RCSIO • 18/4/08
doi:10.5737/1181912x184180185
treatment, suggesting the impairment could have been due, at least
in part, to the anxiety and stress of having been diagnosed with
cancer. This would imply the need for baseline assessment of
cognitive status prior to treatment. Schagen and van Dam (1998)
report 32% of breast cancer patients who received high-dose
chemotherapy were cognitively impaired in comparison to 16%
who received standard dose chemotherapy and Schagen et al.
(1999) concluded a chemotherapy group of breast cancer patients
exhibited heightened levels of impairment in the areas of
concentration, memory, attention, and verbal function in contrast to
a surgically treated group. An extensive review of studies (n=57
with 3,424 patients) of cognitive functioning after chemotherapy in
adult patients concluded there were similar effects for those treated
with chemotherapy as those treated with cranial irradiation. In the
28 trials reporting quantitative data on patients with cognitive
deficits after treatment, 44.1% (range 18%–75%) of 451 patients in
the chemotherapy group, 44% (range 29%–83%) of 320 patients in
the radiotherapy group, and 64.5% (range 30%–100%) of 229
patients in the combined irradiation and chemotherapy group had
deficits.
Clearly, the evidence is growing that cognitive change occurs for
cancer patients. Unfortunately, the available literature’s sole focus has
been on quantifying the phenomenon of cognitive impairment or
“chemobrain”. Study of the patient perspectives and experiences in
living with cognitive impairment after treatment has not been
undertaken. Health care professionals know the incidence and nature
of side effects, but they also need to understand the impact the side
effect has from the patient’s perspective and how to assist patients in
coping with subsequent changes.
The purpose of this exploratory study was to understand and
document cancer patients’ experiences with changes in cognitive
functioning following cancer treatment. Gaining insight into
patients’ perspectives about the impact of these cognitive changes
on daily living and the strategies they have found to be useful in
coping with the respective changes was seen as valuable in
guiding the development of future informational and support
interventions for patients who are at risk for, or have experienced
cognitive changes (i.e., “chemo brain”), and for their family
members.
Purpose
This exploratory qualitative study used in-depth interviews with
cancer patients receiving treatment for their disease. Following
ethical review by the Hospital Research Ethics Committee a
purposive sample was accrued from a comprehensive cancer
program. Nurses caring for the patients told them that the study was
being conducted if they met the following criteria: 18 years of age
or older, English-speaking, no history of mental illness within the
last six months, no use of medication (antidepressants, narcotics) in
the last six months, started chemotherapy treatment a minimum of
six months ago, received a definitive diagnosis of breast,
gastrointestinal, genitourinary, gynecological, hematological, skin
or lung cancer, and reported experiencing mental “fogginess”,
difficulty remembering or concentrating since start of
chemotherapy. If the patient was interested in hearing about the
study, the nurse contacted the research assistant (RA) who informed
the patient about the details of the study purpose and participation.
Those who wanted to participate signed a written consent form.
Participation involved one interview regarding the person’s
experiences with cognitive changes that had occurred since
receiving treatment, the impact of these changes, and what
strategies the person has used to deal with the changes. The
interviews took between 30 and 60 minutes, depending on how
much detail the patient wished to share.
Methods
CONJ • 18/4/08
The open-ended questions used in the interview were designed to
encourage exploration of the patient’s own perspectives about the
cognitive changes they were experiencing. Once several
demographic questions had been asked (i.e., age, work status,
marital status, educational status, cancer type, date of diagnosis)
participants were asked in an open-ended manner to describe the
events surrounding the diagnosis and treatment of their cancer. This
was followed by queries about what cognitive changes they had
noticed, what impact the changes had, what they had done to deal
with the changes, what they found helpful, and what the cancer
centre might do to assist patients with this type of experience.
Probes were only used to encourage elaboration (i.e., tell me more
about) or to seek clarification (e.g., did that happen before or after
the treatment?).
The words “cognitive changes” were used in talking with
patients about this work during our interviews. However, our
experience with the pilot interviews revealed that we needed to add
examples of cognitive changes for clarification purposes (i.e., we
told patients that cognitive changes include things such as not
remembering names and numbers). The word cognitive did not
have meaning for individuals in our pilot work. During the initial
testing of the interview guide, we also identified the need to ask
each patient about each type of cognitive change. Patients struggled
in describing the full range of changes they had experienced.
Therefore, in the interview, we first asked an open-ended question
(i.e., what type of cognitive changes have you experienced?) and
let each person mention the ones he or she wanted to mention and
talk about those in detail. We then followed up with a specific
question about any cognitive changes that had not been mentioned
by the patients (e.g., have you noticed changes in doing
calculations?). Our “checklist” of cognitive changes was created
after reading the literature on potential for cognitive change
following chemotherapy. In the end, the interview became
somewhat more structured than we had originally intended. All of
the interviews were conducted by the RA and audiotaped for future
transcription. At the end of the interview, general information about
cognitive changes was provided and the offer of support or referral
extended to each patient.
All interview tapes were transcribed verbatim and identifying
features removed. A content analysis was performed (Speziale &
Carpenter, 1999) using all interviews, including our pilot interviews.
All team members independently read each transcript in its entirety
and made marginal notes about the content. The team members then
discussed their impressions of the interview content and, working
collaboratively, designed an overall categorization scheme (set of
categories) for the subsequent analysis. All interviews were then
coded on the basis of this agreed-upon scheme by one team member
(MF). The content within each category was then reviewed in-depth
and summarized, and the key ideas were identified. These key ideas
are reported below as they concern patients’ experiences with
cognitive changes following cancer treatment.
Sample
A total of 32 cancer patients participated in this study. The seven
men and 25 women ranged in age from 20 to 72 years (average 57.2).
Twenty-four were married or living with a partner and eight were
continuing to work during their treatment. A cross-section of cancer
types was included (See Table One). Twelve were living with
metastatic disease. Allocation of numbers by two different research
assistants resulted in numbers assigned for 33 and 35.
Findings
Context of the interviews
The participants in this study described the shock and dismay they
felt when their cancer was diagnosed and the initial treatment
decisions were made. They were keenly aware of the disruptions
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RCSIO • 18/4/08
cancer and its treatment brought to their lives. All were able to
describe cognitive changes that had occurred (see Table Two) and
pinpoint when those changes became evident. A few indicated they
had experienced some forgetfulness prior to the cancer diagnosis that
they had thought was a result of aging (n=7) or menopause (n=2). The
majority of the participants (n=26) attributed the ‘new’cognitive
changes they experienced primarily to the chemotherapy they had
received.
For about a quarter of the participants, the changes were most
noticeable in the few days following a dose of chemotherapy. They
would notice an easing in the intensity of the changes four or five
days after the chemotherapy treatment. The alterations would become
evident again with their next dose of chemotherapy. Those who had
chemotherapy during their initial diagnosis had actually noticed the
cognitive changes eased substantially once their treatment stopped,
but returned as the treatment for their recurrent disease started.
Approximately a quarter of the sample held the idea that, ultimately,
the changes were transitory and expected that things would return to
normal after treatment stopped. This was clearly the context in which
they were dealing with the cognitive changes they experienced.
Sometimes I’m frustrated. But I’m thinking it’s a temporary thing
and it’s all going to go away. Once my system gets back to normal,
I’ll be okay. Once I get back to work and be active… once I start to
think and do things, then maybe my brain will start working a bit
better. (31)
However, about a half of the participants in this study indicated
that once the changes occurred, they remained (i.e., were ongoing)
with little alteration. Some with recurrent disease had not noticed
any easing or alteration in the cognitive changes even during their
period of remission. From their perspective, the changes were
permanent.
It’s very frustrating… I thought that, you know, once all the chemo
drugs were out of your system, you might have it for a few more
months. But I’m sure it’s exactly the same now... has just never
returned. (P1)
doi:10.5737/1181912x184180185
distracted, or had a decreased attention span, and found it hard to take
in new information or recall it when they did.
I find I have to re-read paragraphs in books. I really don’t absorb
what is there. And I can’t concentrate for very long when I am
reading… I’d say I was “sharper” before the chemo. Now, I do forget
little things. Like, I’ll go into a room and say, “I knew I came here for
something, but now what was it?” I move along a little more slowly,
just not thinking as fast as I used to. (1)
I’m more irritable than I used to be. So you know, I maybe get
bored with something quicker than I used to… that’s what I would
say… especially if something really isn’t interesting. (11)
I was just in a fog. I just felt really spacey, I felt that I couldn’t
react quickly enough. (29)
Impact of the changes on daily life
The impact of the cognitive changes was often described in
terms of what the person could no longer easily do either in terms
of daily living, work, or leisure activities. For some, the changes
and the subsequent impacts were not clearly evident to others.
Recognizing the change had occurred and finding ways to handle
the situation could become a challenge for both patients and family
members.
Well, it was quite, I wouldn’t say irritating, but just a bit, uh,
frustrating… I’d have to ask my family and friends to repeat things or
I’d forget things and then they wouldn’t understand that I’m not trying
to deliberately forget things. I actually can’t remember what I’ve been
told and what was said five minutes ago. So, it was kind of difficult for
them, really. And more difficult for me… ’cause they [family] didn’t
understand what I was going through and then I had to come to grips
with that I can’t do things like I used to… before. So it was quite
difficult. (8)
Describing the changes
These participants experienced a range of cognitive changes with
varying degrees of intensity. Nine described experiencing one
change, while eight described two, seven described three, seven
described four, and one described five. The extent of the
descriptions varied widely with some participants providing rich
descriptions about the cognitive changes and the impact of those
changes in their lives.
The most commonly identified cognitive change concerned
memory (n=29) (see Table Two). The capacity to remember names,
numbers, and details about events or situations was decreased.
My short-term memory is gone. Shot. It slides at times. Usually
for the first three or four days only. Then I’m right back. I’m sharp
as a tack. Calculations are hard. I find calculations hard. And
sometimes I just zone out... it’s like blanking out for a bit... New
information? I just can’t keep it in, not like the old days... I have to
go over it a couple of times to retain it. I take it in, but I can’t
remember it. (2)
...short term memory and inability to find my way through my
thought process. If I’m telling a story, I go off topic and I cannot call
out the word that I need to use… all of a sudden the name and the
place that I’m referring to leaves me. It’s so frustrating. (35)
Well, when I got out the door, and I’ve got five things to remember,
sometimes I’ll have to go back four times to get what I thought I had
in the car, that kind of thing. (19)
The second most commonly identified cognitive change was
concentration (n=17) and the third, comprehension (n=10). Often, the
changes were intertwined. Participants found they were easily
CONJ • 18/4/08
182
Table One. Selected demographics (N=32)
Gender:
Age:
Marital Status:
Work Status:
Education Status
(Highest Level
Completed):
Type of Cancer:
Male
Female
25
Average
Range
Married/Common Law
Single/Divorced/Widowed
Employed (working)
On leave
Retired
Other
Grade School
High School
College/University
Post University
Breast
Colorectal
Gyne
Hematology
Lung
Pancreas
7
57.2
20–72
24
8
8
9
11
4
2
8
18
4
15
8
3
4
1
1
RCSIO • 18/4/08
doi:10.5737/1181912x184180185
The basic impact on daily living was described in terms of feeling
the need to be organized in order to get things done. Past
organizational patterns were no longer working. Decision-making,
problem solving, concentrating, and keeping track of information
were not as easy as they had been in the past.
…I’m doing a lot less and I have more time to do it… I’m not
working… my kids are grown. Whatever I have to do in the house, it
takes me so much longer to do it. And just making the decision to go
out, for example, if I’ve got to go shopping, it’ll take me two or three
hours to get up and do it… it takes me a while to get myself organized
mentally, physically, to go out to go shopping. (5)
During chemo, I found it… very difficult to concentrate… my
concentration was less than average… I felt quite scattered doing
tasks… I just had to get a grip and get organized. I am an organized
person, so it was not my typical behaviour. (25)
I think planning things, thinking things through, reading [are
different]. Forgetting exactly what I was doing or where I put
things. I still haven’t found some things I put away (laughs)… I’d
totally forget what it was that I read or what it meant or what day
it was… It’s like reading it, understanding it… just sort of
disappears. (21)
…you hear people talk about how they go to the video store and
they keep watching the same film. Well, I’m sort of in that category
now. I go and I look at the back [of the video case] and it sounds
pretty good and I bring it home. My husband said, “Well, yeah,
you liked it because we already saw it” …when I go to the video
store now I can’t go without my cell phone so I can phone him and
say, “Okay, I’m looking at this, this and this. Have I seen any of
these?” (1)
Completing activities at home that demanded attention to detail
could sometimes be overwhelming. In addition, as a person first
noticed the changes, it could be frightening or, at best, worrisome.
I couldn’t remember… and I was so upset. I could not remember
what was a pound and what was a cup… it was for a recipe… I had
not heard about chemobrain… I got it and I was frightened… well I
was upset… I was so relieved when I learned about it… it’s the little
things, the numbers, the names, the little daily things and I’ll get upset
with myself to the point of crying. (19)
I was like an electronic whiz before… show me how to do
something with a machine and I could grasp it and learn it and then
do it. But I’m finding that really, really difficult. We have a home
theatre and… I’ve had to have the people from Bay-Bloor come up
Table Two. Frequency of cognitive change
Item
Memory (forget names, numbers, details, etc.)
Comprehension (taking in new information)
Concentration (easily distracted,
decreased attention span)
Number of
Participants
(N=32)
29
10
17
Trouble finding words or information when talking 6
Calculations hard to do
Feels like fading in and out (“in another zone”)
Confused/cloudy/fuzzy (“dopey” thinking)
More emotionally reactive, fearful,
irritable, not as open-minded
Feel disorganized
CONJ • 18/4/08
4
2
6
5
1
about four times and go through everything with me. And I write it
down when they are here… and then I try to do everything and I get
confused… I’m 46 years old and I feel like I’m 86. (1)
The individuals who continued to work noticed cognitive changes
as they performed their work-related activities. They had a clear
picture of the differences in what they could do before and after the
treatment.
…sometimes I’ve got to be figuring out numbers for the businesses
and stuff like that, or my stocks… so. if I can’t figure out something
over the phone, it bothers me. Because sometimes I have to do fast
calculations… Well I can’t do it, you know, figure out the percentages.
And that bothers me. (2)
At work I’ve noticed a few times… starting to tell somebody a story
about a student that they would need to hear, say for example a
guidance counsellor, and then recognizing in their eyes, ‘oh I guess
I’ve told them already’. (22)
…if I had to review big documents, it would be much harder to
absorb it all. I’d have to go through it more times than I normally
would… I remember my boss coming to me with a binder two inches
thick and I sort of looked at her and said, “You’ve got to be kidding,
it isn’t going to happen.” (14)
Participants described social changes they had noticed and
thought were related to the cognitive changes. Being in a social
situation was a challenge for some who had experienced changes in
their capacity to concentrate on what others were saying and take in
information.
I don’t get into heavy conversations and I get tired out easily. Even
just talking to somebody for a long time, it just tires me out. I’d rather
just listen. (5)
Forgetfulness, something I call tracking. Following a
conversation, I needed more staying power. I just had trouble, not
just with general conversation, but tracking something that
required moving from point A to B. Sometimes I’d forget the inbetween stuff. (22)
Some participants noticed the cognitive changes had an impact on
their enjoyment of leisure activities.
I used to read a lot… write poetry and I don’t do that anymore
because I can’t concentrate. Like, I’ll start something and I’ll just like
drift… my brain gets foggy, things just seem blank. Reading is very
hard for me right now. I can read say a, maybe a short essay or
something. Or I can read the newspaper, or maybe even a couple of
paragraphs. But I can’t read a book. (8)
I was quite a film buff. I’d go to five films a day for all 10 of the
Film Festival days… I could remember all the names and the plots
and things. Now, I still go and I still love it; I’m doing two or three
films a day because four or five just, they muddle together so much
now… a day later, even if I really loved it at the time, I would have a
hard time remembering the details… so, film was a pretty big hobby
of mine. So that’s something that’s very disappointing to me that has
changed. (1)
Emotional response to the changes
As the participants discussed the cognitive changes they
experienced, they often described their personal feelings about the
changes and the impact on their lives. Feelings ranged from dismissal
or resignation to irritation and frustration. Whether or not the person
found the changes to be problematic could be evidenced in the
intensity of these feelings.
It doesn’t bother me, it’s just part of life. I’m fighting for my life as
it is, so memory would be the least of my worries. Death is my biggest
worry. Actually, death and pain… but the loss of memory, because I’m
not in business, I’m just at home. (2)
Sometimes I laugh. Everybody laughs about it. It’s funny… I wasn’t
angry you know. When you’re frustrated, that assumes that there was
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anger in there. There was no anger. I just felt stupid. You know,
walking into a room with my keys, thinking, “I’m supposed to go
somewhere, where am I supposed to go?” (laughing). (6)
It was all so… extremely frustrating. Because I’m a very organized
person. Very organized before, and I was always, have been always
able to, in my mind, organize things, and not necessarily have to have
lists to remember what I need to do. Not now. And that was tough for
me. (16)
Finding they were not able to do what they could easily in the past
often left these participants thinking of themselves as stupid. In turn,
this feeling had the potential influence on their self-esteem. Living
with the situation often left them feeling a sense of fatigue and being
overwhelmed with no end in sight.
I can’t remember things. I find I doubt myself now… constantly
rechecking. (20)
So you get frustrated because you forgot something, which eats up
more of your energy, which makes you more tired… You have to redo
what you already do… (14)
[It makes you feel] stupid… frustrated. You know, like you wanna
be able to be healthy, and the way you used to be, and it’s just one
more thing thrown on the pile, you know. (13)
I don’t know whether one comes to terms with it… if one defines
themselves based on intellectual capabilities and then you find that it
diminishes in any way, shape or form, there is a reactive depression
that goes with that. (10)
Dealing with the changes and their impact
How participants were dealing with the cognitive changes seemed
to vary based on whether they thought the changes were permanent or
temporary, the degree of impact they felt from the changes, and their
attitude about their situation (life philosophy). The notion of just
having to accept the situation as part of the cancer experience was
described frequently.
…I don’t get upset because I know it’s not going to be permanent.
I’m hoping once this [chemo] stops, it’ll stop happening. As long as
it doesn’t get any worse, you know… I get annoyed with it, but I try
not to let it upset me. I’ve tried to laugh at it. (15)
Someone told me it would take a year. You have to accept it like a
lot of things with cancer. (33)
I’ve learned to accept it… always I think positive. That’s my
attitude for everything in life, and hope for the best. (P2)
I don’t think there is any intervention that is going to change
things. So I just have to accept it as part of the territory. (10)
They [cognitive changes] aren’t the big things that shut down your
life, they’re the little stupid things that you do, you forget… names
and people… it’s, well, embarrassing. (25)
doi:10.5737/1181912x184180185
…I think that if people know that they are not the only ones that
feel this way, then they’ll be able to, not to be as frightened about it…
I think it’s more frightening if you don’t know where you are. (6)
Participants thought that the potential for cognitive change needed
to be mentioned by health care providers initially before treatment
was started.
…it should be mentioned, just like all the other side effects… even
if it only happens to a few people… there’s not much you can do about
it and obviously, to save your life, you’re going to do all the
traditional things that need to be done… it should be mentioned so
that it’s not such a shock. (21)
The situation regarding cognitive change should also be monitored
during and after treatment. If cognitive changes occur, then sharing
ideas about how to manage those changes would be welcomed by
patients. Participants mentioned the value they saw in having a list of
what patients and family could do about the changes and examples of
what others had found useful (i.e., share Table Three).
…I’d say anything that I’ve gone through in treatment I just feel a
whole lot better, no matter how awful it might feel, to know it’s
normal. It’s when you get those wacky things that nobody’s ever had
before or mentioned before that I find more upsetting. When you are
warned, when you know it is a consequence, then I don’t get as
stressed about it. I just make a plan. (25)
Finally, the participants described how responses that health care
professionals give when patients raise questions about side effects can
be helpful or can create a barrier to further conversation about how to
manage the changes. One patient’s comments illustrate how the
professional’s response can be non-supportive:
…talked with my oncologist and she sort of “pooh-poohed” the
whole idea. She said there’s no such thing [as chemobrain]. Or there’s
no proof. But I would be interested in talking to a couple of patients.
I thought, well you know what? Just because it hasn’t been studied
doesn’t mean that it doesn’t exist for various people. (22)
This investigation was undertaken to learn more about the
experiences cancer patients had with cognitive changes during and
following treatment. Learning more about their experiences and how
they managed any changes can help guide the development of
educational programs. Clearly, the strategies that participants described
in this study can be incorporated into educational written materials.
Discussion
Table Three lists various strategies participants described to deal
with the cognitive changes they experienced. By far the most
frequently identified strategy involved writing things down, and
included making a list, taking notes at meetings, and maintaining a
calendar. People developed personal reminder systems for themselves
and for their family members (e.g., post-it notes on the fridge,
coloured stars on a calendar, leaving phone messages for themselves
at home if they were away from home, etc.) and included telling
others, enlisting help, making use of humour, and acknowledging the
reality of the changes.
Perspectives on how health care professionals could help
Participants talked a good deal about the need for information
regarding the cognitive changes. When asked about the advice they
would give to health care professionals, providing information was
suggested most frequently.
Tell us about it. (1) We need to know what to expect so we are not
caught off-guard. (2)
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Table Three. Patient-initiated strategies
for coping with cognitive changes
•
•
•
•
•
•
•
•
•
•
•
•
Write everything down; keep lists and carry them with you
Keep a journal (dates, times, conversations)
Highlight different activities in different colours
Use a chart board or white board in kitchen—develop a
system of reminders
Keep things in the same place; keep names and numbers all
in one
Don’t try to do too much at one time; right after chemo, don’t
try to do too much
Do crosswords; play games with your mind; keep your brain
active
Tell people about it; don’t hide it; learn about it
Use a joke once in a while; laugh
Get others to help you; carry a cell phone
Stay positive; recognize it is part of your life now
Consider doing something in a new way (e.g., write versus
computer; magazines versus books)
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doi:10.5737/1181912x184180185
The participants plainly illustrated that, for some, cognitive
changes do occur and have significant personal impact. The changes
may not be entirely evident or noticeable to others, or measured
definitively on a standardized scale, but they are very real to the
person. The changes have the potential to be frustrating,
embarrassing, or humorous, depending on how they affect daily
functioning and the individual’s attitude about the effect. If they
interfere with something the individual considers important, the
resulting emotional reaction is heightened. Individuals respond in
accordance to their perception of threat or harm associated with a
particular event in their lives.
The proportion of patients who expected that the cognitive
changes they were experiencing were temporary is noteworthy. Given
the degree of permanent change other participants described, we
could see this notion of temporary impact might be a source of future
distress for patients. Cancer nurses need to be alert to patient
expectations regarding the lessening of side effects. Future research
needs to isolate the factors that create permanent cognitive change. In
the meantime, this is an important piece of information to incorporate
into educational programs with patients to help in setting realistic
expectations.
The importance of providing information about cognitive changes
and how to cope with them was a key finding in this investigation.
Repeatedly, patients indicated they wanted to be warned ahead of
time about potential difficulties. They did not want to be “caught off
guard” or be worried about something being abnormal if they
experienced a change. Additionally, they wanted ongoing monitoring
and information about how to manage any changes that occurred.
Clearly, there is an onus on cancer nurses to “check in” with the
patient and to provide information regarding cognitive changes
throughout the cancer experience.
Finally, the investigative team was struck by the potential
differences between what the patients experience, and choose to talk
about, and what the health care professional care provider can
observe during clinic visits. The descriptions participants shared
during this study revealed uniquely personal consequences of
cognitive change, much of which they had not shared with their care
providers. The impact of cognitive change is very real to the person
living through the experience, but the actual change may seem to be
small or non-existent in the eyes of the care provider. The change has
the potential to add burden to the suffering patient’s experience.
Whether the changes are normal, expected, and seemingly somewhat
inconsequential to the health care professional, they can be profound
to the person who is coping with them day by day. Cancer nurses
need to be ever sensitive to the person’s reality in living through the
cancer experience. Learning about that reality requires use of openended questions by cancer nurses and the capacity to listen to the
individual patient’s story of daily coping with cancer’s demands on
their lives.
This study offered an initial exploration of the impact of cognitive
changes that can accompany cancer treatment. The descriptions
provided were rich and offered a poignant picture of the consequences
some cancer patients experience. Future research is needed to enlarge
our understanding of the consequences in other groups of patients and
to identify effective interventions to help individuals cope with the
cognitive changes they experience.
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